Dementia is a catch-all term for memory loss, resulting from physical changes in the brain, that can interrupt everyday life.

Alzheimer’s is the most common type, affecting up to 60% of those diagnosed, but there are many variants.

Some, like Creutzfeldt-Jakob disease, are fast moving and rare. Others, for example Lewy’s body dementia, progressively worsen over time.

All these different forms of dementia show a similar pattern.

Dementia in three stages

When dementia affects the brain, it progresses through three main stages: early, middle and late.

Early

The affected individual can still drive, work and be social – but they become forgetful. They struggle with conversation and start misplacing things. Planning and organising become challenging.

Middle

In this longest phase of dementia, these symptoms become increasingly visible.

The sufferer gets confused by time and place, forgets people, events and basic information, becomes moody and withdrawn.

They can still fend for themselves, with assistance. Those helping them need to assess where help is needed, and how to simplify daily tasks.

As the dementia worsens, carers need to consider outside assistance, including respite and day care, where the sufferer gets the help they need in a secure environment, and the carer gets a break.

Late

By now the person with dementia cannot communicate coherently, their memory and cognitive skills steadily worsen and eventually, they lose control physically. The only option left may be round the clock, intensive care. 

This intensive care comes at the end of a dementia cycle, where the experience for sufferer and those supporting them can vary enormously.

 

Jacky’s story

In 2012 Jacky’s husband Dave, at the age of 70, was diagnosed with Alzheimer’s, after Jacky had noticed Dave displaying some typical symptoms.

A previously confident man started having anxiety attacks and needing constant reassurance. Conversations got muddled up, names forgotten.

Jacky knew she had caught Dave’s dementia in its early stages.

Time to plan

Jacky still had a husband who could discuss his illness and jointly make plans.

When Dave’s condition worsened 6 years later, Jacky was ready, giving up her job and caring for her husband full time. 

A year and a half later Dave was attending a day care centre once a week, allowing Jacky some respite and a chance to work on the house.

Jacky felt in control. COVID-19 changed all that.

Communication is key

Confined to the home, and unable to do all the activities Jacky had arranged for him, Dave became confused and frustrated. 

Frustration escalated to self-harm and physical abuse towards Jacky – the police became involved, repeatedly.

Jacky was constantly trying to second guess and deal with Dave’s rapidly advancing dementia – stopping him from pulling out his fingernails, from urinating on the walls.

Second-guessing was becoming too much. When the day care centre referred Admiral Nurse Christa, Jacky found someone who:

  • helped her understand, for the first time, her husband’s mind, to interpret his angry moods.
  • believed in her, and understood the trauma she was experiencing.
  • helped Jacky face the next step, full-time care for Dave – and for her a life alone.

Support, and a route to follow, that Chris and Heather had to work harder to find.

 

Chris’s story

In 2016 Chris was diagnosed with young onset vascular dementia.

Caused by an interruption of blood flow to the brain that starves it of oxygen and nutrients, this type of dementia affects the ability to think.

After a second diagnosis of vascular parkinsonism, and then a diagnosis of possible Lewy body dementia, Chris, like Jacky, gave up her job and relocated. 

Unlike Jacky, Chris was given no clear route to follow.

D.I.Y journey to find answers

Chris found her own answers through the Lewy Body Society, who referred her to Rachel, an Admiral Nurse.

In Rachel, Chris found someone who understood what was happening to her – and who showed Chris and her partner, Heather, how to cope.

Game-changing support

Small tips helping each partner understand what the other was going through:

  • putting tape on switches and furniture to counter Chris’s changes in vision.
  • creating a whiteboard plan to counter memory loss.
  • imagining you are your partner, and living their experiences.

Rachel encouraged them to be open, positive and proactive.

A level of support Lucy would have loved.

 

Lucy’s Story

If Lucy had insisted her brother Robert be properly assessed at the time of his car accident, perhaps the family would have had time to prepare for what followed. Instead, they were always reacting.

A late diagnosis

Five years elapsed before Robert’s head injury affected him, when Lucy suddenly had to deal with a brother she didn’t recognise. 

A brother who started to lie and become violent – early warning signs, a diagnosis revealed, suggesting possible frontotemporal disorder (FTD), a dementia caused by steady nerve cell degeneration in the frontal and temporal regions.

Lucy’s brother needed urgent care, but the system wasn’t prepared.

Self-help

The services available weren’t geared to someone in their 30s – only the very old or very young. No one helped or advised Lucy and her family.

They helped themselves by:

  • moving to a bungalow to accommodate the wheelchair on which Robert was becoming increasingly dependent.
  • pressurising their MP to get Robert a flat with a warden. 
  • washing, cooking and shopping for Robert – for four years.

When the system eventually reacted to the family’s persistence, admitting Robert into a care home, he was already in the advanced stages of dementia – swearing, behaving indecently and threatening suicide. 

Too little too late?

Robert settled in well and the family realised that finally he was ‘home’, receiving the care he needed.

Care that lasted three years, before a dramatic downturn saw Robert spend his last days in hospital, unable to swallow and fed through his stomach using a PEG (percutaneous endoscopic gastrostomy).

Too weak to fight a chest infection, Robert died, aged 46.

Robert’s family were left without a son, wondering, perhaps, if his dementia could have been prevented.

 

Can memory loss and dementia be prevented?

Some risk factors cannot be changed, such as age, genes, level of education, but there is encouraging evidence that 40% of dementia cases can be prevented or delayed by targeting risk factors like excessive alcohol consumption, smoking, high blood pressure, diabetes, obesity, untreated depression, hearing loss, physical inactivity, social isolation. 

Therefore, regular exercise, a balanced diet and improved lifestyle choices (less alcohol, for example) can make a difference.

 

Last Word

These stories illustrate that, with an early diagnosis and the right level of support, dementia can be managed.

MemoryClinix is providing the opportunity of both getting an early diagnosis and the right level of support, and it is also the first memory clinic in the UK that is offering dementia prevention services.

Written By Charles Waters
November 2021

Reviewed by Dr Elin Davies, Consultant Psychiatrist
January 2022